Wednesday, September 19, 2012

My Path to Autism Acceptance

Linda at Outrunning the Storm
outrunningthestorm.wordpress.com

My son, Charlie fell apart last fall when kindergarten started. So did I. It was one of the darkest times in my life. But, I can say today -- and I don’t say this lightly -- that I am so very glad for everything that happened last year.

All of it.

You see, last fall I felt like my child was broken. I knew I was broken and I had no idea what to do about any of it. Most days Charlie wasn’t fit to leave the house. I stopped talking to people. What could I say? I live in fear of my five year old child’s violence?

I couldn’t. I didn’t.

Instead I went to my blog. Under the guise of anonymity, I went to my blog and I wrote and I wrote and then I started reading. Everyday, I read every single post that appeared in the WordPress autism/aspergers tags section. Every single one.

And that is how I came across this. Quiet Hands, by Julia Bascom. (You might note I am the first commenter on the piece.)

That was the day that started to change my life.

It is an undeniably beautiful piece of writing, but initially it didn’t seem overly relevant to my son’s life. I had never heard the phrase ‘quiet hands’ used before. We had never been introduced to ABA and I knew nothing about the therapy. My son did not have any visible stims that I was aware of.

But, there was one phrase that echoed through my mind over and over.
“...because until I move 97% of the way in your direction you can’t even see that’s there’s a 3% for you to move towards me.”
For weeks whenever I was interacting with my son I would hear that phrase in my head.

I had really wanted to be one of those mothers I read about who moved heaven and earth to save my son. I was so sure the right thing to do was to teach him simply to fit in and to be more like the rest of us. I didn’t want to bury his quirks, I always thought those were beautiful. I just wanted him to learn to behave.

But, it wasn’t working. I was failing. He was failing.

That phrase just kept playing through my mind and I started to think. I started to question how much I was expecting him to move towards me. I sought out more autistic bloggers. I listened. I learned. Even when the voices were angry. Even when the message was hard to hear.

I started paying attention to the ways I could move towards him. Instead of just seeing his behaviors as an unreasonable attack on me because of his autism I told myself this was the best way he could communicate with me in that moment. I did my best to listen. I did my best to learn. Even when the message was hard to hear. Even when the message was violent.

For once I strove to meet him. Just where he was. Just as he was. I let go of the fight and I accepted and embraced autism.

Nothing has ever felt better.

I hear it said a lot that autism acceptance and autism positivity are just spreading hearts and flowers and ignoring the hard realities of autism. I’m not here to tell you that my decision to embrace autism is what turned things around for Charlie. It was one part of a much more complex equation.

What I will say is that it is what changed me. It is what brought me peace. It is what made me stop caring what strangers in the supermarket thought or mourning for the life I thought my son wasn’t having.

I don’t think of acceptance as a destination or a permanent state I have reached. It is a path I strive to follow everyday and I believe I still have much to learn on this road.

And yes, there are still moments that I wish my son wasn’t autistic. Just like there are moments when I wish I didn’t have kids at all. Just like there are moments when I wish I wasn’t gay or a woman or that I had more money or any number of things that really just mean my life in that moment feels a little too hard or overwhelming or scary for a particular reason and I want there to be something that makes it easier.

I don’t beat myself up over these thoughts. I take them for what they are; a reminder to step back, take a break, walk away, ask for help.

So, today I can tell you I am grateful for every premature gray hair on my head and wrinkle on my face that I acquired during last year’s stress.

Because it all brought me to this place. A place where I am ready when things get hard again, as I know they will, at some point, in some way.

This time I will be ready. Maybe not yet with all the tools he will need for the situation at hand. But, with the tools I will need.

I will accept.

I will listen.

I will be sure I am moving towards him as much as he is being asked to move towards me.

----

A version of this post previously appeared at outrunningthestorm.wordpress.com

TPGA Acquisitions Editor: Rob Gross